Saturday, January 10, 2009

Dave's doing drugs

Among the skills I have picked up in the strange alternate universe of CLL -- I think many of us have earned a Junior Hematologist badge, for example -- is Armchair Urologist, or Parser of Piss.

I'm not sure which title I like better. It all depends on how the medal will look on my CLL Cadet uniform. I am providing a graphic of the hematology badge here, but obviously more work needs to be done on the concept, including a helmet to protect us from small children with hacking coughs.

However, I digress.

Readers may recall that hemolysis, the process by which autoimmune hemolytic anemia destroys red blood cells, can turn urine orange. This is because the red cells are red and their dead hulks combine with urine's natural yellow to make, as we all learned in first grade, orange. Several times during 2007 -- my annus horribilus of hemolysis -- I was alerted to sudden ill-fortune by the color of my urine.

On Wednesday it happened again. What floated in the toilet that evening was just too dark, too burnt, too damned orange. By Thursday morning there was no doubt about the consistency of the color. This wasn't a one-time thing; it couldn't be blamed on the contrast I had to drink for my CT scan Wednesday morning. Things had definitely changed for the worse. Marilyn verified my suspicions (oh, the wonderful stuff CLL couples get to share). I am sparing you photographic examples, dear readers, despite the age of the cheap and easy digital camera.

Since I had enough hemoglobin in reserve -- it was measured at 12.1 on Monday -- I did not hear the pounding in my ears that often comes when I am hemolyzing and the re
d cells are quickly declining. Which just goes to show that you need to multitask when looking for symptoms of hemolysis. Besides listening for pounding and examining urine, I would recommend being aware of subtle changes to your physical stamina -- for example, did you get more winded walking up the steps today than you did yesterday?

(Since we're discussing the art of hemolysis divination, this may be a useful aside: Although my hemoglobin was h
igher on Christmas Eve eve when I did hear the pounding, I had also had a lot of brandy and egg nog that night -- ho, ho, ho! -- and my theory is that the alcohol in my blood may have facilitated a thinning or enhanced an echoing that I might not have otherwise heard. This is yet another reason why getting drunk periodically is very important for those in my situation.)

* * *

Meanwhile, back at Orange Elimination Ranch . . . A phone chat with Dr. Belle on Thursday led to doubling my dose of Decadron (dexamethasone) to 8 mg daily, as well as to a stat CBC Friday morning. Sure enough, my HGB had dropped to 10.9 in just a few days; my overall red count went from 3.48 to 3.05.

The good news is that the higher dose of Decadron turned my urine a lovely pale yellow again, something that would probably be named "whispering sunrise" in the Ralph Lauren paint section (what have we come to?) at Home Depot.

But I know all too well that it won't hold me for long. So I will be arriving bright and early Monday at Dr. Belle's o
ffice for some chemotherapy, which I prefer to think of as my Day of Hematological Beauty.

We're doing a round of RCD -- Rituxan plus cyclophosphamide plus dexamethasone -- the protocol advanced by Kanti Rai and his group to combat CLL and AIHA (as well as ITP). This is quite similar t
o what I had three rounds of starting in October 2007, just without the one baby dose of vincristine and with dex instead of methylprednisolone. Hopefully that will nail the AIHA like it did in the past (all the relapsed patients in Rai's study responded when treated with RCD again).

We'll be doing a second act, of course, and maybe a third. We may do more rounds of RCD, we will explore some other ideas, and I'm sure we'll go over the CT scan to determine how hard we feel we need to hit the disease.

The fact is that I can't rely forever on RCD or a variant to get me through the CLL-AIHA double whammy.
I need to consider sterner measures that don't also have the effect of shooting myself in the foot, or at least not blowing the whole foot off. (I'm thinking that cadet uniform needs some lead boots.) Whether this means going with a traditional approach or something more experimental, only time, education, and discussion with my doctor will tell.

* * *

Meanwhile, I'll try to fit in a little rest on chemo Monday. I plan to bring a good book, The Pirate Hunter: The True Story of Captain Kidd, an entertaining read about privateers and pirates at the turn of the 18th century. This is what probably started me thinking in terms of costumes for CLLers.

That, and my natural tendency toward eccentricity, which is only enhanced by the Decadron's powerful side effects. It should be said here that having had both dex and methylprednisolone (Medrol), I can see a definite difference in the mental as well as physical effects of the 'roids. Medrol made me just a tad worried about things. I remember staring into the mirror one night and wondering if my gums were receding. Dex puts me more into overdrive, in a positive and focused way. I'm getting less sleep, but, hey, have you noticed that there are a lot more posts to this blog of late?

Speaking of which, I am promising you an interesting post next week about something else that has happened in my life, torn from today's headlines. It tuns
out that yours truly sort of knows someone famous, or that would probably be "infamous." A modern-day pirate, matey.

Aaaarrrghh! And I do mean aaaarrrghh (as opposed to aaaarrr), with all the frustration the word entails. Stay tuned.


Anonymous said...

I suspect that you're doing absolutely the right thing, but like the Mercury Astronauts, let's hope that you have the "right stuff".

The reason that I alluded to those men (there were no female astronauts in the US program at that time) is because Dr. Rai's report only included 9 patients such as you with relapsed AIHA.

Don't you just love having to make such decisions based on information gleaned from such small cohorts of people!

Personally, I have found this to be one of the most difficult aspects of dealing with treatment choices for my own brand of CLL.

Good luck,


David Arenson said...

I hear you about making decisions in the dark, or at least the haze. But I also know a couple of other things going in:

*This treatment worked like a charm last time.

*My latest FISH test shows no change in status -- that is, as far as we can read the fishy tea leaves, there is no reason to suspect that I have developed a new or meaner clonal population within the past year that will make me less responsive to treatment.

*I have responded quite well to the dex in terms of node reduction, another indicator that I am sensitive to treatment.

So I'll hold on to my helmet and get ready to blast off on Monday.

Jessica said...

Good luck on your next round RCD.
Thanks for sharing the details of your AIHA treatments here. I have been reading your blog and learned a great deal about CLL/AHIA from you.

My mom had it a couple of months ago. She had 3 low doses of cyclophosphamide (200mg each) and the standard Rituxan (once daily for 4 weeks). At that point her HGB stayed around 10, which was pretty good for her, she ever dropped all the way to 4.4.

On 12/30/08, she had anothr low dose cyclophosphamide 200mg with her HGB 10, then on 1/5/09, she had one more 200mg cyclophspamide that made her miserable, her HGB has been dropping since 1/5, to today's HGB 8.3.

We haven't figured out if her HGB dropping was caused by her 12/30/08 cyclophosphamide (6 - 10 days to take effect), or if she is really hemolyzing...

I heard that cyclophospamide could drive down the cell numbers. Did this happen to you each time you used it? Did it lower your HGB or PLT? How long did they take to come back to normal numbers?

Thanks a lot,

David Arenson said...


R-C(V)P treatment led to temporary neutropenia in my case; the neutrophils fell to around or below 500 at certain intervals after the treatment (about two weeks or so, if I recall correctly) and then quickly recovered.

I had the R+C together, once a month for three months, and the HGB and PLT continued to improve as time went on.

Cyclophopsphamide is not commonly given alone to treat AIHA; steroids and Rituxan are more typical lines of defense. Cyclosporin would be another option, as would infusions of IViG. Danazol may be worth looking into. There's splenectomy if worse comes to worse.

I am not an expert on cyclophosphamide but my sense is that HGB should improve, not go the other way (but this is really a question for the doctor).

A way to doublecheck whether your mom is hemolyzing now would be to test reticulocytes and haptoglobin, which would be high and low respectively if hemolysis is occurring.

All the best to you and your mom in dealing with this difficult beast.


Jessica said...


Thanks for your reply.

I had the R+C together, once a month for three months

What were the dosages you were using for that once a month treatment?

by the way, my mom has been on prednisone (25mg/day). She is diabetic, therefore it is harder for her to control her blood glucose while taking pred.


Anonymous said...

Hi David, I have recently found your blog researching AIHA which I also have with CLL. I am on the steroids (Prednisolone) and my dose is down to 20mg from a starting point of 50. I am having a problem with glucose and 'wee' testing at regular intervals which has become my new hobby. You can have fun with it, especially when you drop the test stick in the loo by mistake (you can then learn how to go fishing!) I learned from your post this morning about the colour etc (I didn't know this) and am interested to know if you compared it with a paint sample chart as you got quite poetical with the colour description:-) Soapy

Anonymous said...

would that pirate be Bernie Madoff?

Jessica said...

Hi David,

One more question about cyclophosphamide: did you get it via IV infusion or oral pills?

My mom had a few dosages via IV infusion, but the speeds of infusion some things caused her heart discomforts (short breath, heart ache, etc), her heart is weak. So we are thinking about getting the oral form of cyclophosphamide for her, tomorrow she will see the doctor and it will be discussed then....

Have you ever tried the oral form? what is the worse part of the oral form compared to the IV infusion?


Jessica said...

Hi soapy,

My mom has CLL/AIHA/Diabetes. She had Rituxan, and has been on Cyclophosphamide and prednison (25mg/day). It was so hard for her to control her blood glucose, no matter whatever we tried, her blood glucose just went up and down without a pattern. Over a week ago, she was checked into the hospital to just regulate her blood glucose.

The doctor said that since my mom had been on pred, her baseline glucose had been too high and the insulin she was taking could not stabilize her baseline blood sugar level. A few days ago, the doctor switched my mom to another kind of insulin -- Lantus, and it worked. It got my mom's basal (backgroud) blood glucose controlled. But this insulin takes care of only the basal part, she has to take another (short-term) insulin to go with her 3 meals.. Her glucose numbers look a lot better now.

What I am trying to tell you is that: if after enough trying/testing you still can not see the good numbers you wanted to see, you might want to switch to other options.


David Arenson said...


I got the cyclophosphamide through IV and am not familiar with the oral form. The protocol (see link below) was 375 mg/m2 of Rituxan, followed by 750 mg/m2 of cyclophosphamide. This is the protocol:

I think with the glucose issues it might be prudent to look into options (cyclosporin?) that don't pump up the sugar. Cyclophosphamide can lead to hyperglycemia -- after my therapy I had to be very careful about sugar intake for awhile, and I am not diabetic. Take a look at the BC Cancer Agency link on the right; click on "cyclophosphamide" when you get there and you will see details of side effects, including a chart mentioning hyperglycemia as an early onset symptom, from days to weeks after having had treatment.

As with all tricky situations, it may be advisable to seek a second opinion with a doctor, like Clive Zent at Mayo, who is expert at CLL and AIHA.


Your color chart idea is interesting and one of these days maybe I can put it together. Suffice it to say that urine should be yellow -- pale, or even a deeper hue if you have been taking, say, B vitamins.

It's when the color begins to deviate -- even in pastels -- and there is a hint of orange -- that I get concerned. Keep in mind that I am subject to rapid onset of hemolysis, so urine changes I see may be more dramatic than those seen by people for whom hemolysis proceeds slowly.

I would add that if the urine seems to concentrate in the center of the toilet -- if the outer part looks pale but the center looks a little orange and deeper in hue, that is another thing I look for.

Anonynous matey,

Stay tuned. I am still waiting for my Rolex to come in the mail.

Jessica said...


Thanks for your info... I will start looking at the side effects of cyclophosphamide.


soapy said...

Jessica, Thankyou very much for the info on your Mum's glucose. Mine's OK as long as I dib't touch anything sweet. I am now down to 10mg a day of Pred and next week 10mg one day and 5 the next alternating for a week. I have been told that treatment will start as soon as I can get off the steroids. Hell's teeth!

soapy said...

Jessica, I also took Cyclophosphamide (FC under the UK4 trial in about 2002). Although the Fludarabine was iv, the Cyclo was injected into a canula in my wrist/hand, very very slowly. I have a history of heart disease (angina) and had an angioplasty 20 years ago. Maybe they were running it is too fast? Usually the oral form is used in the UK.

soapy said...

David, thank you for the info on cyclo and hyperglycaemia. I am due to start RFC soon so I will read up on it.

The urine info is also very useful. Don't we discuss some interesting stuff on the net :-) Better than a newspaper any day!